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Increased pain when reducing steroid dosage

  1. Reply to Green Granny

    I dont see any reason why you shouldnt go on holiday depending on what it is If you were going to climb Everest a definate NO !! I am on my second bout of PMR this one started last October I started on 20mg and am now down to 7.5 but am struggling to get below this My GP also says listen to your body but she also gives me monthly blood tests and nothing is reduced unless they have improved Everyone seems to have very different levels of ESR and CRP for their doseage on this sight so I think it is the improvement which is important not just the level as the range for normal is quite large I dont have GCA and have managed 2 holidays since I have had my 2nd bout of PMR but these have been relaxing holidays and I do have my Husband to carry the suitcases !! My Dr said not to try and reduce my steroids again until a week after I got back and this week I have done things slowly and rested ready for I hope a reduction next week Having had this illness before I know how easy it is to get depressed with it when you have to rest so much so if you feel a holiday would do you good and you could cope with it go for it I dont think it would be possible to have had PMR for just 6mths I had it for 2 years the first time and I was 'Text Book' but I have a feeling I am not going to be so lucky this time around !! I am so glad I have found this site this time as it certainly helps to speak to people who understand As a lot of people find it a bit hard to accept you are ill if you look just the same !!

  2. Hello Green Granny

    I've been on steroids for PMR since 1 May last year and I got down to 7mg. I've temporarily increased to 10mg because of a flare-up when decreasing to 6. My doctor doesnt believe regular blood tests are necessary as he said how I feel is a good indicator of how the I am. When I'm on an adequate dosage I feel quite well most of the time.

    In September I spent 2 weeks in France doing a lot of walking, some of it quite taxing and coped very well. However, I didn't decrease the Pred for some time before my holiday, but made sure I was on a dose where I felt well. Also we alternated active days with rest days.

    We all would love to be off Pred, but it's better to do it slowly, but surely.

    Hope you enjoy your holiday!

    Jak

  3. Thanks everybody for the help. I have certainly found a memory foam pillow a real help for neck pain, don't think I need the mattress which makes the holiday situation a little easier. Right. Holiday is in the Isle of Wight, going by public transport. We have been there in the past, doing a lot of walking and it is a hilly part. OK I accept that walking is one of my main problems at the moment and I'm happy to sit with a good book. I guess it's the journey that' s bothering me and I'm going to have to think about that pretty seriously, I'm sure there are ways. I will take the advice to not come down off the steroids just before and to make sure I feel pretty stable on the dosage.

    About misdiagnosis, there are 4 people in my road, about 150 yds apart, all apparently with PMR. All of us go to the same medical practise, 3 with the same doctor. Weird. Or just coincidence, but I didn't think PMR was that common. I don't query my own diagnosis, although I don't have the classic symptom, of not being able to get out of bed in the morning. But steroids do make an enormous difference. I have only had one Blood test though, so will ask my doctor when I see him next Tuesday. Thanks everyone, Green granny

  4. Talking about coincidence - I'm 50 and my colleague was diagnosed with PMR when he was 57, both ages considered to be a bit \"young\" for PMR. We share a gp and an office, my colleague and I, he had just recovered (almost 2 years to the day) as I was starting symptoms. I keep saying I caught it off him. :wink:

    On the subject of travelling - we drove for 12 hours to get to where we were going and I slept for 2 days. We tried going out for drives, but I just nodded off in the car. After that I was right as rain. :roll:

    Jak

  5. I have just been re-reading all your posts, so Hi again to everyone after a few weeks trying to sort myself out a bit!

    I am taking everyone's advice about not coming off the steroids too quickly - at the moment from 13 mg to 12mg. but doing alternate days, bit by bit. That seems to get even more important as the doses get lower. I printed off \"The Burden of PMR\" by Prof. Dasgupta from the PMRFighters website and, apart from emphasing the lack of research etc. he says \"A study of 27 patients proposed 3 categories of disease course;a rapid response without significant relapse; a rapid response requiring extended treatment; and incomplete resolution of symptoms requiring increased doses of steroids and extended treatment\". I don't how much that fits in with people's experience but it does account for the widely varying accounts one hears. Someone near me said she felt perfectly fit as soon as she was put on steroids, no loss of energy etc. and only begen to experience discomfort when she came down to about 7mg. Still had plenty of energy. Lucky woman!!

    Have any of you tried Ibuprofen Gel? I tried some on my neck and it helped a lot but I wonder whether one should steer clear the same way one does for the tablets?

    The sunny weather does cheer one up doesn't it? Green granny

  6. Hi Green Granny Glad to hear you are managing to reduce a bit at least I found those comments about PMR quite interesting as the first time I had it I was definately on the rapid response no increase in symptons and managed to get from 20 mg to nil in 2 years This time around after starting on 20 mg I have tried 3 times to get below 7.5mg and my blood results have gone up a bit Im not feeling too bad but have managed 2 pull 2 muscles and had 2 colds in 2 mths !!! Im at present doing 7.5/6 and just playing it by ear really Review with the Dr in 3 weeks and will then see whether she thinks I should aim for completely pain free and increase the steroids or see if my body ajusts itself I dont want to increase the steroids unless I have to but I would like to know really if long term you are better doing this I dont have GCA so I realise my problems are small compared to some but I do feel the tiredness very debilitating sometimes and am trying very very hard not too put on to much weight I have tried to be a bit more active (hence the pulled muscles !!) just not to sit around and get depressed I realised I needed to do something after I was so upset about not being able to get my blood results last Friday and having to wait till Monday !! Needed to think about other things !! Hope I dont go on to the third stage of this illness !!

  7. Hi Green Granny, glad to hear that you are feeling better. I quite agree that reducing the steroids should be done in very, very small steps. I'm hanging in there on 5mg daily at the moment and hope that my tests in a couple of weeks time don't come up with any urgent reason to put it up again.

    I've used both Proflex cream and lately Voltarol Gel with very good results, particularly for neck and shoulder pain and I know of no reason why they shouldn't be used - if there is, can someone let me know? I rely on them at times when I'm unable to use oral painkillers.

  8. I have been on Pred for a good 15 years when my doctor diagnosed PMR. At his and my consultants request Ihave tried to reduce them, but the pain in my kneck returns, I also take Tramadol and Paracetermol which do help for a time, but the mornings are horrendous, getting dresses takes ages. I get %mg and 1mg tablets, I have had a transfusion which did nothing. I am at the moment On 12mg from !5 but I am considering going back to 15, you have to have some quality of life, I am 76, and its alright the Doctor telling me to reduce them, he doesn/t have to live with it. I am booked in for some treatment in October, I am not sure what it is, I will keep in touch, It's nice to share ones problems with people who suffer likewise.

  9. Tinkerboy - has your GP tried looking for any other reason for the neck pain? If 15mg of pred isn't dealing with it it could well be something other than PMR. Certainly neck pain could well be degeneration of the discs and unfortunately there is little to be done about that .

    However, I've just had a very bad few months (far too complicated to describe here) and finally I have seen a pain therapist who has identified that all the muscles in my back are in spasm and that is what is causing a lot of the pain. I should have recognised it as it is something I have had problems with before but I think the pred has masked some of it and in fact it wasn't too bad until I tripped and fell - but then my sacroiliac joint just siezed up and it was so bad I was admitted to hospital. The inital therapy caused other problems so I was sent to the pain people - in this case an anaesthetist who uses injections of local anaesthetic into trigger points (I live in northern Italy and this is a common treatment technique in German-speaking areas at least) which has relieved the worst and now I've been handed over to the physio for manipulation of the stiffened bits of my spine and work on the muscles which are so tight they pull other bits out of position.

    Something I used to use in the UK is Bowen therapy and it worked wonders in the early days of my PMR. Google it and you should find a local practitioner. It's sort of osteopathy for soft tissue - muscles and ligaments - and very safe and quite gentle. A good practitioner will tell you that if there isn't an improvement in 3 treatments then it is something that Bowen won't help. It was developed by a physiotherapist and many physios use some of the moves (as they call them) that they use. Mind you, a good osteopath or chiropractor would also be an option - but they have a habit of telling you you need treatment every week for the foreseeable future which is expensive. I used to have 2 or 3 sessions of Bowen every 6 to 12 months because of the PMR being ongoing. If it is a simple problem that can be sorted you don't need that - and it is particularly good for shoulder problems by the way.

    Good luck in finding something that helps

    Eileen

  10. Hi

    I started on 40 mg pred 2 years ago and now down to 3mg and 2.5mg alt days.

    I find when you get on such a low dose you must reduce far more slowly.

    I start 1 day a week on a lower dose only by 1/2 mg, then the next week for 2 days with 4 days inbetween

    then 3 days a week etc. when I have reduced by 1/2mg everyday I stick at that for about a month before I start reducing again. I find I still have a little stiffness and pain but nothing like if I were to reduce too fast

    I have 5mg, 2.5mg and 1mg tabs also have a very good pill cutter!

    hope you find a good regime soon

    Koukla

  11. Hi Koukla - long time no hear! How nice to see you back and how are you doing? All rather changed round here - but it finally seems to work. Only took them 3 or 4 months - must all be men!

    EileenH

  12. Hi EileenH

    pretty good at the moment. after my flare up in Jan I've got right down now. However, I have now been diagnosed with non marker RA as well as my OA knees all on top of PMR. I now take 20mg methetrexate as well as pred which has made a lot of difference. Lots of side effects to start with but got through that.

    Just have my knees asperated every 4-5 months. I can now exercise reletivley pain free and have lost a stone in weight, which makes you feel better anyway. Don't have a moon face and can get back into my jeans. But it's always in the back of my mind when the next flare up will come and have to start from square 1 again. So I am relishing this respite at the moment. All this and I'm not even 54 yet that comes next week.

    Thanks for asking anyway most people don't bother.

    Koukla

  13. Oh what a pain Koukla! But - have you got PMR, or is it the LORA (late onset RA)? I can't remember off the top of my head but quite a proportion of people who are first diagnsoed with PMR are later dx'd as LORA. They don't know if the PMR morphs into the RA or whether it is just they are so similar. And I think that is why some people benefit from methotrexate alongside their pred - the mtx works on the ones who are maybe LORA.

    However - how lovely to be able to move without pain and to have lost the weight! I'm jealous! I've just had a very interesting month or so, ending up in hospital for 3 weeks when I reacted badly to the treatment for sacroiliacitis (inflamed sacro iliac joint). Now I have a ton of tablets for atrial fibrillation and high blood pressure. POOOOOOHHHH!!!!!!!! Strangely, my blood pressure was great at admission originally and on the tablets it seems to be lying higher - don't know what that is about. I was also given statins despite my protest - and got muscle weakness and pain so they've been ditched. Now I'm waiting to recover from those effects. The weakness is lot better - I was struggling to walk 100 yds with crutches last week. Now my thighs just hurt - just like PMR. So who knows what is what.

    Have a lovely birthday - maybe the best present will be LORA that behaves!

    Eileen

  14. Hi All,

    not posted on here for ages, but all going well until a few weeks ago! I was on the second day of taking 2mg when everything went pear shaped. Upper body pain, which I had not experienced much of before, stiff and painful neck, shoulders and upper arms, and10 times more leg pain than ever. I had been reducing half a mg a month, but not in one drop, in other words a quarter mg a fortnight. I tried 3mg, a little improvement, but nowhere near as comfortable as previously, so I increased to 5mg, and I have my life back!!! Not too happy about needing to increase, but I couldn't tolerate the pain and stiffness!. There's only so much grinning and bearing it you can do!! I'm now wondering how long I should hold 5mg. Last time I held for 3 months. Would appreciate any thoughts on this. Not in any hurry to start reducing again I have to say!

    Eileen, I'm so sorry you've been so unwell, and had to go into hospital. I hope you feel much better very soon.

    My best wishes to you,

    Molly.

  15. Molly

    MrsO Consultant recommended 6 months at 5mg and then a very very slow drop.

    The current thinking seems to be no more than 10% at a time. You can do this in various ways, either 5, 4, 5,4,4,5,4,4,4,5,4,4,4,4,5,4,4,4,4,4,5,4,4,4,4,4,4,5,4,4,4,4,4,4,4 and stay there if comfortable for at least month.

    My Consultant, said 3 months at 5mg and three months at 4mg, etc.

    So slowly slowly and if you are uncomfortable, go back to where you where comfortable and wait and start again. The tortoise won the race.

  16. Mrs K,

    thanks for your reply. I was reducing far slower than my rheumy recommended, he advised 1mg per month, and I've been doing half that, but I will hold 5mg for a while, and then take it even slower than before. I'll have a try at the method you suggest.

    Best wishes,

    Molly.

  17. Good luck Molly - good to hear from you again - not so good a reason though!

    Eileen

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